PHACE Syndrome Tampa, FL
Hi my name is Kristyn. Three weeks after my daughter was born a large facial hemangioma grew on the left side of her face. She has been on propranolol since she was 4 weeks old, she is now 10 months old. She had a mri/mra done last week that showed abnormalities in the blood flow of the brain and neck. It seems like in Tampa, FL NO ONE knows what they are doing. Does anyone have any advice? Trying to figure out what the next steps are. We've thought about taking her to the childrens hospital in Wisconsin. Any thoughts?
Last edited by koneal : 06-18-2013 at 01:53 AM.